The 'Shame' of Chronic Illness and Pain

“Shame derives its power from being unspeakable….
If we cultivate enough awareness about shame to name it and speak to it,
we’ve basically cut it off at the knees.
Shame hates having words wrapped around it.
If we speak shame, it begins to wither.” Brené Brown

Over the summer, I read Brené Brown’s fabulous book Daring Greatly. The book follows her famous TED Talk on vulnerability that previously inspired me to write on the power of vulnerability.
The full title of the book is Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent and Lead. It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more wholeheartedly and to connect more with others, as well as helping us to overcome the destructive burden of shame.
Her book really got me thinking about the concept of shame.
I have been part of the Christian church all my life, so I am used to hearing the word shame. We believe it is something destructive that we can overcome and that the grace provided by Jesus’ death and resurrection can break us free from its grasp.
This book caused me to really reflect on shame – what it is and what it really means, and it inspired me to consider these questions:

Where does shame have a hold on my life?

How does shame effect my thoughts and actions?

How might shame be damaging my well-being and relationships?

“Shame is a soul eating emotion.” C.G. Jung

WHAT IS SHAME?
Words we often connect or use interchangeably with shame are words like embarrassed or humiliated. Shame can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self-medicate to avoid thinking about it. We dread people seeing it.
Although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference. Guilt is the feeling of embarrassment or regret about something you have done wrong. Shame, on the other hand, can be felt even when we have not done anything wrong.
Shame is connected more to who we are and how others perceive us.

“It’s a painful feeling about how we appear to others (and to ourselves)
and doesn’t necessarily depend on our having done anything.” Joseph Burgo

The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to see how shame had got a hold on me and particularly how it has affected me over the past year or so.
Finally, I began to see and recognize that I feel ashamed that I am battling a chronic illness.
There we go. I have said it. It’s out in the open.I feel ashamed that I am ill.
I feel ashamed that it has gone on so long.
I feel ashamed that I can’t seem to get well.
I feel ashamed that I cannot work and be busy like I used to.I feel embarrassed to be sick!
When I decided to speak up and write about feeling ashamed of being ill, it led me to Google the words: the shame of chronic illness. Through that search, I foundtwo insightful blog posts by Angelika Byczkowski, in which she shares something of her battles with the chronic connective tissue disorder, Ehlers-Danlos Syndrome (EDS).
She writes so beautifully about the humbling journey of with chronic illness and pain:

“When I recently read the phrase, ‘I’m embarrassed to be sick,’ it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling…I am ashamed of being sick…If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, ‘If you’re so smart, why did you let this happen to you?'”

Those words were so revealing to my own heart. I have begun to see that I feel like a failure for being sick. If I was only a bit stronger or wiser, if only I made better choices, if only I was a bit more positive, if only I had more faith, than surely I could have overcome this sooner.
Such thoughts taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, when I blamed myself and felt responsible for still being ill.
It’s so humiliating to be so unwell and in pain long-term.
Angelica highlights this beautifully in another post titled The Subtle Arrogance of Good Health. She writes that many of us have fallen for a trap we set ourselves – that before we got ill, we carried a form of arrogance about being healthy.“My attitude was the typical thoughtless ‘arrogance of good health,’ the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”
As I read those words, I, too, knew it was talking about me. Before I got ill, I carried the arrogance of good health, believing I was strong enough to shake off illness when others couldn’t, because that was all I knew.
I was not the type who would succumb to illness’ chains. I was always so healthy that surely I could overcome anything thrown at me, right? Surely my faith and positive mindset would win.
And then one day in January, 2015, I fell off of a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and a brain injury that I haven’t yet overcome. I have been unwell for 20 months. Each and every day, I battle through chronic pain, physical and mental fatigue, a foggy brain, barriers to treatment, and the challenges of not being able to heal, get well, or get free.
And honestly, I feel ashamed on so many levels.I feel ashamed that I have now become one of those people with chronic pain and illness.
I actually hate using the word chronic at all (which is revealing of the stereotypes I accepted before).I feel ashamed to tell you that I feel weaker than I ever imagined possible, physically, mentally and spiritually.I feel ashamed that my old positivity has taken a massive hit and most days, I battle overwhelming feelings of despair at the thought of not getting better.I feel ashamed that I broke down mentally at Christmas, exhausted and with nothing left for the fight, and seriously considered ending my life. I feel ashamed that the same ‘selfish’ thought has returned at times since then, although thankfully not to the same depth.

“In my view, suicide is not really a wish for life to end.
‘What is it then?’
It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die, but to hide.” Orson Scott Card

I feel ashamed every time I have to update people on where I am at, that I am still not well, that it’s gotten worse, that it is not yet over.I feel ashamed when I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.I feel ashamed that I cannot yet testify to the fact that I am fully healed and whole, even though I believe in a loving creator God and Father who can do the impossible.

“O my God, I trust in You; Let me not be ashamed.” Psalm 25:2

I feel ashamed telling doctors that I can’t seem to get better and hope that they will see past the chronic pain patient with the unusual condition and know that it’s not ‘all in my head’ so I can continue to get treatment.I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t fix me or when my symptoms don’t always fit with the diagnosis.
Each day this drags on, the shame gets worse.
Each day the shame is becoming almost as much of a burden as the illness itself. Each day the shame is debilitating and making me feel small. Each day the shame is robbing me of my voice and tempting me to retreat from the world.
And it has to stop!I HAVE TO BREAK FREE!
So today, I am making the unspeakable speakable, for myself and for the multitudes who travel this dark road of chronic illness and pain.
I am speaking out my shame so that it can no longer chain me up with its lies. I am choosing to acknowledge the space it has taken up in my thoughts, so that we can tear down its strongholds together.
Today, I chose vulnerability to speak the unspoken, so that you and I won’t have to suffer in silence.
Today, I choose to fight shame so that even though this condition taunts me daily, trying to persuade me I can never be free, it doesn’t have to define everything I am, everything I do, or the relationships with those around me.
So today, whether you are battling chronic illness and pain or know someone who is, I pray that together we can tear down the chronic pain stereotypes, those that perhaps we also once secretly adhered to, no longer allowing shame to rule our and others’ lives.

“If we cultivate enough awareness about shame to name it and speak to it,
we’ve basically cut it off at the knees.
Shame hates having words wrapped around it.
If we speak shame, it begins to wither.” Brené Brown

BECKY HILL lives in Leicester, UK and is a wife to Matt, mum to two girls, and a pursuer of Christ. Becky and Matt love the local church and have been involved in pastoral ministry for many years. In January, 2015, Becky fell from a step ladder causing a debilitating cerebrospinal fluid leak, which means she has to spend much of her day lying flat. Becky loves words and writes to connect, encourage, share her journey, and inspire others facing suffering, chronic illness and pain.

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Ma-am, though I come at chronic illness from a different slant — receiving a lifelong diagnosis as a juvenile, and essentially not knowing another way of life — I empathize with anyone’s shame and guilt. In fact, just last night someone tried to use the financial cost my disease as a vindictive weapon to shame me. And I tell you what, I stood my ground – though later I cried aplenty about their misconception, their misunderstanding, and their mistreatment. What we battle, as believers who endure chronic illness, is not only our physical & mental & emotional selves, but what we ultimately battle is the dangBlasted enemy, the father of lies, the worker of deceit, and the master of evil. When I stood my ground, it was *His* ground – He knit me, He knows me, He catches my tears, He hears me, He sees me, and He loves me. I am His child. No.Matter.What others say. No.Matter.What I think. No.Matter.What I fear. His mercy and grace remain the same. And as I prayed through clenched teeth, and with a twisted heart, I plead for reminders of truth and strength. I do the same for you today.
And last night’s prayer – look, look how God’s used you to reassure and comfort me in my lifelong health battle. “Oh my God, I trust in You.”
May the Lord bless you as you shine His light!

These are such good words! It does seem that shame is such a common element for those of us with chronic illness. I have heard it from so many as well. Thank you for being willing to open up and share here. May the Lord lift us out of these pockets of shame, and may we hear the Truth of how LOVED we are by Him! Blessings to you!

Reblogged this on aBodyofHope and commented:
Brene Brown says that, “if we speak our shame, then it begins to wither.” This writer who suffers a similar condition as I, has written so openly and powerfully on the vulnerability of illness. This is a revelation, and a battle cry. Please read to the end.
(Trigger Warning)